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1 seeing the person in the patient The Point of Care review paper Joanna Goodrich and Jocelyn Cornwell

2 The King s Fund seeks to understand how the health system in England can be improved. Using that insight, we help to shape policy, transform services and bring about behaviour change. Our work includes research, analysis, leadership development and service improvement. We also offer a wide range of resources to help everyone working in health to share knowledge, learning and ideas. The King s Fund 2008 First published 2008 by The King s Fund Charity registration number: All rights reserved, including the right of reproduction in whole or in part in any form ISBN: A catalogue record for this publication is available from the British Library Available from: The King s Fund Cavendish Square London W1G 0AN Tel: Fax: Edited by Edwina Rowling Typeset by Grasshopper Design Company Printed in the UK by The King s Fund

3 Contents List of figures About the authors and acknowledgements v vi Foreword vii Preface ix Introduction 1 What is the issue? 1 Why is it important? 3 Sources of evidence and methodology 4 The themes 4 1 The experience of patients in English hospitals 6 Introduction 6 Stories 7 Surveys 10 Complaints 15 Discussion 16 Key messages 17 2 Making sense of patient-centred care 18 Introduction 18 Health service research and the academic literature 19 Definitions of quality 19 Definitions of patient-centred care 20 The dimensions of patient-centred care 21 Everyday language used in hospital 22 Policy 25 Discussion 28 Key messages 29 Further reading 29 The King s Fund 2008

4 3 What do we know about how to improve the experience of patients? 31 Introduction 31 A framework for the analysis of factors underlying patients experience 32 Evidence on the effectiveness of interventions to improve patients experience 38 Selected interventions 39 Discussion 42 Key messages 44 Appendix A Research methodologies 45 Appendix B The Institute of Medicine s definition of patient-centred care: a review of the literature 50 References 54 The King s Fund 2008

5 List of figures Figure 1 Figure 2 Patients involved as much as they wanted to be in decisions about care and treatment, England, 2004, 2005 and When you had important questions to ask a doctor, did you get answers that you could understand? 13 Figure 3 Did doctors/other staff talk in front of you as if you weren t there? 14 Figure 4 Information received on discharge from hospital, England, 2004 and Figure 5 A framework for the analysis of factors influencing patients experience 32 The King s Fund 2008 v

6 About the authors Joanna Goodrich joined The King s Fund in 2007 to work as senior researcher/ programme manager for The Point of Care programme. Her background is in health and social policy research. Her previous career has included working as a public health information analyst at the Health Development Agency and designing, managing and carrying out research in both public and voluntary sectors, most recently the Multiple Sclerosis Society. Jocelyn Cornwell is Director of The Point of Care programme. Previously she was at the Audit Commission, directing value for money studies. In 1999 she was seconded to the Department of Health to lead the team establishing the first national health inspectorate in England and Wales, the Commission for Health Improvement (CHI). Later, as Deputy Chief Executive at CHI, she was responsible for the design of the review methodologies, research and evaluation. As Acting Chief Executive, she managed the transition from CHI to the Healthcare Commission. Jocelyn is the Chair of Connect, the communication disability network, and a trustee of the Mental Health Foundation. Acknowledgements We would like to thank The King s Fund librarians for their invaluable help with the literature review, and others at The King s Fund for their support: Steve Dewar, Charlotte Moore-Bick, Julie Palmer-Hoffman. Thanks also to Charles Vincent and Jenny Kowalczuk, and to Dr Kieran Sweeney, Jill Maben and other members of our advisory group for their comments and encouragement on drafts of the paper: Steve Allder, Derek Bell, Nick Black, Susan Burnett, Robert Dingwall, Mary Elford, Liz Fradd, Abigail Gaunt, Sally-Ann Hart, Valerie Iles, Hilary Schofield, Kathy Teale, Judy Wilson. vi The King s Fund 2008

7 Foreword There is much to celebrate in today s health service. Patients are treated more quickly than ever and the obscenely long waits that were once such a feature of our system are a thing of the past. We have seen significant progress in the treatment of cancer, stroke, heart disease and mental illness the big platoons of ill health. Not before time we are learning how to keep people as healthy as possible in addition to responding when they become ill and in so doing we are beginning to tackle the huge challenge of helping them to manage their long-term conditions. And yet there is unease about the most important characteristic of any health system how patients are treated, not in the sense of which medical intervention is offered, but how they are cared for, how they are looked after. Many have compared the way the health service treats patients unfavourably with the way major companies handle their customers. But it is both more complex and more important than that. It is of course easy for any vast organisation to seem impersonal, the more so when its staff feel under pressure. In health care we have the added complication that the customers often have little or no choice about where or by whom they are treated. And that is not about to change for a whole host of patients, including the large number who are treated as emergency admissions. Equally important, the patient is almost invariably more vulnerable than the average consumer this is often a time of anxiety, discomfort or distress. Given the size of our National Health Service, there are bound to be examples of poor care. The system may never be perfect, but the aspiration should be to deliver good care to every patient. Currently, there is evidence to suggest that we should be worried about this most fundamental interaction between health care staff and their patients. That is why we have launched The Point of Care programme. Our ambition is to work alongside frontline staff and their managers and focus attention on patients experience of health care. We want to begin to understand why too often patients feel marginalised rather than empowered and involved in their care. Above all, together with the professionals who deliver services, we want to explore how the experience of patients can be improved. As this first report from The Point of Care programme makes clear, some of this is about getting the basics right so that patients are treated as we would wish our loved ones to be treated, with kindness and consideration, and as individuals with their own needs and wishes. At the same time it is about understanding the dynamics of care in a 21st-century clinical environment and making sure the systems are in place to ensure the experience is right every time no matter which member of staff is involved. Improving the quality of care has become the focus of NHS reform (Department of Health 2008a), and the quality of every patient s experience is at the heart of what The King s Fund 2008 vii

8 Seeing the person in the patient health care is about. The aim therefore must be to deliver high-quality care for all, all of the time. That may prove not to be possible, but better care and a much greater level of consistency certainly is. We very much hope that The Point of Care programme will make a useful contribution towards that goal and that it will be valued by all those who take part as well as all those who engage with it at every level. Niall Dickson November 2008 viii The King s Fund 2008

9 Preface This report is intended primarily for hospital board members, clinicians and managers in hospitals. We hope that it will contribute to and provide support for their continuous efforts to improve patients experience, and that it will also be of interest to patients and their representatives, commissioners and policy-makers. The purpose of the report is to consider how we can improve the patients experience of care. The report introduces current debates and dilemmas in relation to patients experience of care in hospital, presents our view of the factors that shape that experience, and assesses the evidence to support various interventions that are designed to tackle the problems. To inform this report, and the development of The Point of Care programme, we reviewed the research literature; undertook our own qualitative research with staff, patients and families; and commissioned a small qualitative study with a cross-section of hospital and trust staff and board members in four English trusts (see Appendix A, pp 45 49, for details). Throughout this report we use the terms health professional and clinician to cover all the professions, including allied health therapists. The intention is to be inclusive: where it affects the meaning we have been careful to distinguish between health professionals and support staff. However, we believe that what is said is relevant to all health care staff, and the paper should be read with this in mind. The experience of a patient s loved ones, family and friends, also plays a significant part in the patient s own well-being and is important in its own right. Where we refer to patients and their experience, we are therefore including patients relatives and friends in our discussion. We are aware that there is much good practice (and literature) in fields we have not covered in mental health and children s services for example but the scope of The Point of Care programme is currently confined to adult patients experience in acute hospitals. We hope in the future to extend the programme to other areas of health care. The King s Fund 2008 ix


11 Introduction In our times, cutting-edge medicine has been practised in purpose-built hospitals served by armies of paramedics, technicians, ancillary staff, managers, accountants, fund-raisers and other white collar workers, all held in place by rigid professional hierarchies and codes of conduct. In the light of this massive bureaucratisation, it is a small wonder that critiques once again emerged. The hospital was no longer primarily denounced, however, as a gateway to death but as a soulless, anonymous, wasteful and inefficient medical factory, performing medicine as medicine demanded it, not as the patient needed it. (Porter 2002) What is the issue? When people are ill in hospital and depend on others to look after them, it is of fundamental importance to them and their families that they will be cared for with kindness and compassion by everyone they come into contact with. Care of people who are unable to care for themselves and compassion towards people who are vulnerable has been a basic tenet of medicine since ancient Greek times (Porter 2002). The importance of attending to the how as well as the what of clinical treatment is widely acknowledged; in the United Kingdom campaigning groups and the media have made it a matter of public concern. In modern times care, compassion and respect for patients is enshrined in the value statements of the health professions (General Medical Council 2007; Nursing and Midwifery Council 2004). We know that health care staff are highly motivated to care for patients with humanity and decency (Department of Health 2007b; NHS Confederation 2008) and identify strongly with the idea that they should care for patients in the way they would want a member of their own family to be treated (Wood 2008). The way a patient is treated as a person has for some time been seen as a cornerstone of quality (Maxwell 1992; Open University U205 Team 1985). Policy-makers and politicians have made patients experience a national priority. The obligation to protect people made vulnerable by illness is often expressed and we are moving towards statutory protection of patients under the Human Rights Act 2007 (House of Lords, House of Commons 2007), and to regulators taking much greater responsibility for the quality of patients experience (Healthcare Commission 2008b; Health and Social Care Act 2008). Improving patients experience is central to High Quality Care for All: NHS next stage review (Department of Health 2008a), and the reason it is important is referred to in the preface to the draft NHS constitution, which sets out certain NHS values including respect and dignity, compassion, and working together for patients: [The NHS] touches our lives at times of most basic human need, when care and compassion are what matter most. (Department of Health 2008b) The King s Fund

12 Seeing the person in the patient Most people spend time in hospital at some point in their lives; most are born and die in hospital and it is intrinsically important to protect and look after people when they are acutely ill. However, hospitals are under enormous and diverse pressures including: rising costs; ambitious national targets; changes in medical and nursing education; the European Working Time Directive; intense technological and process innovation; difficulties recruiting, retaining and keeping staff up-to-date; high consumer expectations. In the United Kingdom, hospital services are consistently rated highly (Coulter 2005; Healthcare Commission 2007c) and doctors are the most respected and trusted professionals (Ipsos Mori 2008). But this sits alongside a deep disquiet about what Porter (2002) calls the soulless, anonymous, wasteful and inefficient medical factories so evident in tabloid newspapers and radio phone-ins, and heard in the stories that patients, relatives and staff tell about their experience of hospitals. The focus of public interest shifts from one thing to another: recently, in the United Kingdom, it has been on cleanliness (notably of toilets and bathrooms), hospital-acquired infections, and neglect of older people in general wards (Healthcare Commission 2007b). While all of these are important in their own right, they are also expressions of an unease about the industrial scale of health care, depersonalisation of staff as well as patients, and the vulnerability of patients in our modern hospitals. Hospitals throughout the developed world are under tremendous pressure. There have been massive increases in the volumes of activity in both planned and emergency care. In England, over the past 25 years, the number of hospital admissions and discharges has doubled (Tallis 2004). There are about 20 million accident and emergency (A&E) attendances a year; roughly one person in three visits an A&E department at least once a year. Between 2002/3 and 2005/6 alone new attendances rose by more than 37 per cent, or 4.8 million attendances (Wanless et al 2007). Total outpatient attendances have risen since the mid-1990s by 6 million (15 per cent). The trend of trusts is increasingly towards larger institutions and staff establishments. Between 1999 and 2005, the number of hospital consultants increased by 38 per cent; between 1999 and 2004, the full-time equivalent figures for nurses and allied health professionals rose by 21 per cent and 23 per cent respectively. Non-medical NHS staff, including managers, porters and administrative staff, traditionally account for about half of all personnel in the NHS. Between 1996 and 2006, the number of non-medical staff increased by 26 per cent (in full-time equivalent terms). This growth in size and staff numbers, along with the use of new technology and the increased pace of organisational life, have had knock-on effects on relationships between individuals and departments. On the one hand it has never been so easy to share information. On the other, staff mourn the loss of personal relationships, faceto-face contact, corridor conversations and meetings in the doctors cafeteria (NHS Confederation 2008). The increasing specialisation of medicine and nursing, in the context of a continuous striving for greater efficiency, has reduced contact time between individual patients and individual members of staff. Since 1998/9 average length of stay has fallen by more than 20 per cent. Patients are older and are discharged sooner. More people, in more specialties and departments, are involved in looking after the same patient. The typical inpatient day is increasingly broken up; patients spend less time on their own ward and more time being transported around the hospital to investigations and treatments. 2 The King s Fund 2008

13 Introduction Why is it important? The case for focusing on patients experience and working out how to intervene to improve it is strong. First, and most important, is a moral and human imperative to protect people when they are weak and vulnerable; to strive towards recovery and healing; and to ensure the humanity of care. The need to do so within complex systems and institutions that are under pressure to increase efficiency and throughput is a fundamental challenge and it is important to find solutions. The goal of improving experience is also justified clinically and therefore in terms of value for money. Evidence from clinical studies shows that anxiety and fear delay healing (Cole-King and Harding 2001; Norman 2003; Weinman et al 2008). Good communication with patients a basic component of the overall experience even in intensive care and with patients undergoing surgery, contributes positively to well-being and hastens recovery (Boore 1978; Hayward 1975; Shuldham 1999; Suchman 1993). Good communication is equally important with patients with long-term conditions and enhances effective self-management (Bauman et al 2003). A good experience for patients is also important for business reasons. Patients are increasingly using the internet to share information about their experience in hospital (see, for example, choices/, There is some evidence that, where they have a choice and the information is available, rates of hospital-acquired infections, perceptions of cleanliness and staff attitudes affect where patients want to be referred (Dixon 2008). In the future, hospitals will suffer financial penalties where the quality of care is poor (Department of Health 2008a) and it seems likely that, as patients begin to exercise choice, hospitals that do not focus on patients experience will have poorer reputations, fewer patients and thus less income. This has been clearly demonstrated in the United States, where hospitals see the quality of patient experience as integral to financial success (Knapp 2006). There are also positive benefits in relation to staff retention and recruitment. Staff want to work in organisations that treat patients as they would want members of their family to be treated (Department of Health 2007b), and quality of relationships with patients positively influences job satisfaction (Cashavelly 2008; Suchman 1993). The tension between the intended moral and ethical purpose of care and the inevitable day-to-day difficulties of retaining that purpose at the point of care is a shared dilemma of all in health care and is the focus for our inquiry and our practical work. As Raymond Tallis says: Doctors and nurses have to overcome the universal, congenital tactlessness that afflicts humanity, and under difficult circumstances: the continuous exposure to suffering, to needy people, in a context where the needs and the suffering have to be translated into problems to be solved and solved problems are reckoned up as output. For this, something more than customer service and a narrowly contractual approach to care is required. (Tallis 2004) Whereas in the past we might have left the quality of care to the health professionals, the starting point for The Point of Care is to define patients experience of care as a product of the whole system of care in the hospital, which is in turn influenced by the wider context. We define patients experience as the totality of events and interactions that occur in the course of episodes of care. Clinical and non-clinical staff at the point of care, and in support services, and senior leaders including non-executives in the boardroom, all contribute to the quality of that experience. The King s Fund

14 Seeing the person in the patient Sources of evidence and methodology Knowledge of variations in patients experiences in hospital and of the forces that shape the experience, and measures that will help to improve it, is comparatively new and undeveloped. It is not yet close to the sophistication achieved in theory, policy and practice development in patient safety over the past 10 years (Institute of Medicine 2000; Institute for Healthcare Improvement 2008). To gain as wide as possible a picture of patients care, we listened to what patients and staff had to say, looked at the research literature and considered relevant government policy. Our research was carried out in three ways: qualitative research with patients and families qualitative research with hospital and trust staff in four hospitals a literature review. Research with patients and families gave us first-hand accounts of what it is like to be a patient in hospital today. It gives the human dimension to our analysis of surveys and complaints. The research with staff investigated the different terminology used and how different staff groups felt about the language used. The literature review gave us valuable information on research, policy and practice in this area, as well as shedding light on the issue of communication the language and terminology used in considering the experiences of patients. What do we mean by patient-centred care, the patient experience, quality? If we do not have a common understanding of the terms used, then how can we work effectively on improvement? Appendix A (see pp 45 49) gives details of the methodologies used in the research. The themes Section 1 examines the quality of patients experience in English hospitals today, assessing information from individual stories and large-scale surveys and from the nationwide complaints. We reflect on the limitations and problems with the available sources of information. Section 2 considers the contribution the literature in health service research and other disciplines has made to our knowledge of the experiences of patients. Key to this is an analysis of the terms, language and concepts used in research, policy and the everyday world of the hospital to discuss patients experience. In all three areas we find that the concept of patient-centred care is changeable; it means different things to different people, and is defined in ways that reflect and reinforce, rather than transcend the division between the various tribes in health care the doctors and managers, the doctors and nurses, the clinical versus the non-clinical, and so on. Faced with the need to define clearly the focus and language of The Point of Care programme as a whole, we prefer to talk about patients experiences of care and to use the Institute of Medicine definition of patient-centred care as including: compassion, empathy and responsiveness to needs, values and expressed preferences co-ordination and integration information, communication and education 4 The King s Fund 2008

15 Introduction physical comfort emotional support, relieving fear and anxiety involvement of family and friends. (Institute of Medicine 2001) Section 2 explains the reasons for this choice. It then looks at how research and language have influenced policy and practice. Section 3 looks at the possibilities for improving patients experience of care. We analyse the factors that shape patients experiences; describe a range of interventions for improvement and comment on the evidence to support different approaches. Finally, we describe in detail three interventions at different levels of service delivery that we believe are supportive to staff and have the potential to make a profound and positive contribution to protecting patients from the dehumanising aspects of hospitals. The King s Fund

16 1 The experience of patients in English hospitals As techniques to measure the quality of health care proliferate and improve, health professionals are beginning to understand that patients and their families hold unique vantage points as expert witnesses to care. For some time, hoteliers, bankers, car manufacturers, and politicians have been enthralled by information about the public s view of their services, including anecdotes, insights offered by focus groups, and data gathered from large scale surveys. Slow to turn to new fashions, health professionals are now learning that those they serve can make important suggestions as individuals, generate worthy hypotheses in small groups, and provide aggregate data through surveys that describe what is and is not going well and that can document the impact of efforts to improve. (Delbanco 1996) Introduction How does it feel to be a patient in hospital in England in the 21st century? Is it a good experience, a bad one, or is it mixed? Does it vary? If so, in what way, by how much and what are the reasons? Is it due to differences between patients or between hospitals? How much does it depend on the type of treatment the patient is receiving, whether it was planned or was the result of an emergency? Is it getting better or worse? And how does it compare to the quality of patients experience of care elsewhere, in Europe or the United States? These questions are fundamentally important for patients and families, as they are for a wider constituency of taxpayers and the general public. Not surprisingly perhaps, given the sheer numbers involved, it is difficult to give meaningful answers: in approximately 29.6 million people attended outpatient appointments; 13 million people were inpatients; and there were 18 million contacts in accident and emergency (A&E) departments in England (Hospital Episode Statistics 2008). We can answer some of the questions, but there are many we can answer only in part: either the data does not exist, or is difficult to interpret or is contradictory. This section comments on the difficulty of fully capturing patients experiences of care with a limited repertoire of tools and on the strengths and limitations of methods currently available. The range of sources drawn on to describe aspects of patients experience in English hospitals today are: stories surveys complaints. 6 The King s Fund 2008

17 1: The experience of patients in English hospitals Stories If you want to know what it is like being a patient in hospital in England in the 21st century, the best thing to do, as Harvard psychologist Daniel Gilbert puts it, is to listen to patients. If we want to know how a person feels, we must begin by acknowledging the fact that there is one and only one observer stationed at the critical point of view she is the only person who has even the slightest chance of describing the view from in here, which is why her claims serve as the gold standard against which all other measures are measured. (Gilbert 2006) Hospitals, as working environments and settings for care, are in a constant state of flux. Patients and families stories about what happens to them in hospital at any one time illuminate current realities and provide valuable insights into the behind the scenes forces that shape the experience. Patients experience of hospital is intrinsically difficult to grasp. It is richly textured and complex. By definition subjective, the experience is such that no one else can know how it works from one moment to the next, how the different aspects of the experience (the process of care, the manner in which it is delivered, the environment in which it occurs, the physical sense of the place) come together, or what they mean for this particular person at this particular moment in their life. Patients stories bring the experience to life and make it accessible to other people. There is no shortage of patients accounts of illness and treatment: patients have tried to communicate in paintings; in memoirs; film; drama; and fiction. Since the turn of the last century, what was once a trickle of written comment in newspapers, journals and other publications has turned into a torrent. Patients stories, their views on illness and its treatment are in print and on the internet. The growth of social networking websites, along with the contemporary appetite for publicising personal experiences that previously would have been considered too private or too intimate to share, makes it likely this will continue. Some patients write to help others, some write as insiders, as health professionals, as researchers or observers, or simply as private individuals trying to understand and explore the experience of illness and treatment. The quality of a patient s experience is invariably the result of the interplay of all aspects of the process and the meanings they have for that one person. At their best, patients narratives communicate vividly the multi-layered texture and complexity of experience in hospital, its intensity and human significance. This account from an episode in the course of treatment for breast cancer captures the interplay perfectly. Test results can be nerve racking. They turn a complex stream of life into a binary event in which your fate seems to hang in the balance. I was especially nervous about my latest CT results. They would reveal whether the small cancers in my head had been zapped by recent whole brain radiation. Or not. I don t exactly know what or not means, but the idea of blobs of breast growing in my brain (what is my breast doing in my head?!), impervious to radiation or drugs, sounds like something out of a sci-fi movie I d rather not be in. Then, a gift when I least expected it the radiology staff in a scanning unit which supplies Sydney s Royal Prince Alfred Hospital were so lovely down to earth, prompt, optimistic that the morning was transformed. My mother and husband had lunch, The King s Fund

18 Seeing the person in the patient coffee, and waited calmly for the oncologist appointment. Although I didn t have the nerve to look at the scans before seeing him my scan reading is decidedly ropey and neuro-anatomy was always something I was grateful other people were good at I stopped being a jibbering wreck. (Donald 2008) Patients do not naturally differentiate between aspects of care or rank them in order of importance. Everything about the process is a manifestation of the greater whole. Equally, patients judgements about the quality of the whole are informed by the care they witness others receiving. This is not because they see themselves as the same as other patients. It is because when they witness something happen to another patient, good or bad, they immediately know that the same could happen to them. We interviewed patients and families (see Appendix A, pp 45 46, for details) in late At the time, among many other priorities and calls on their time, hospital staff and managers were under immense pressure to achieve the four-hour national target for waiting times in accident and emergency; change the pathway for emergency admissions; shorten lengths of stay; and contain and eliminate hospital-acquired infections. In most hospitals, medical hierarchies were changing away from the traditional consultant-led firm, towards consultant teams with teams of junior doctors reporting to them. Junior doctors patterns of work were changing at the same time as their working hours were reduced to comply with the European Working Time Directive. Meanwhile, nursing hierarchies changed to accommodate the central policy-led introduction of modern matrons and the findings from locally driven skill-mix reviews. The patients and families stories of their experiences, both from our research and from the literature, were widely divergent and rich in individual detail, but there were common themes. Unreliable quality Without exception, all the patients experiences of care were mixed. None were wholly good or wholly bad. Fundamentally, the stories describe variability in the experience of care, hour by hour, shift by shift, day by day and from ward to ward. The defining feature of patients experience of care in all kinds of settings within the hospitals was that it was unpredictable and unreliable. Almost everything depended on who was on duty, and beyond that, who was in charge: both factors that to the patients seemed unpredictable. This was a daughter talking about her mother s care: Fluid intake was the single most worrying element of the whole thing and it was very basic stuff really. Equally, particularly when she was on the infection control ward, was her output. She had C. difficile and was going to the toilet about 20 times a day. Whenever I asked Is it clearing up? Oh yes, she has not been at all this morning. But I d only have to visit for an hour and she d be going three times. They were either not observing what was happening or not recording what they observed. This was an experience from a recently published account of five months in a London hospital as an inpatient. I used to dread the nights when agency staff were allocated to look after me. Not knowing where things were stored, they would be much slower in responding to requests for banal but vital things such as urine bottles. Not knowing me or much of my history, they would also tend to be inflexible and suspicious, doggedly insisting that I should be given drugs that I hadn t taken for days because you re still written up 8 The King s Fund 2008

19 1: The experience of patients in English hospitals for them on your chart, or getting panicky and rushing to send for a doctor when my temperature was slightly raised although it was doing no more than following a wellestablished pattern. (Ludlow 2008) Seeing the person in the patient All the patients and relatives talked about the importance of the patient being seen as a person. One woman, for example, had nothing but praise for the care she had received during her 24-hour stay in hospital, even though her (well-documented) need for a special diet had initially been entirely overlooked. In the course of her planned admission for surgery, the ward staff had been unable to offer her anything to eat in the evening. Nevertheless, her assessment after the event was that she had been exceptionally well looked after because staff had handled her so sensitively. The morning after the nonexistent supper, the charge nurse had apologised directly, contacted the kitchen, and someone from the kitchen gave her a breakfast she could eat and an apology. I felt, she said, that they took account of who I am and my needs. The opposite was also true. The failure to see the person in the patient was very deeply felt. This was an ex-nurse, talking about the care of her 87-year-old mother on her admission to hospital following a fall. Significantly, the ambulance crew were the only people in the entire seven weeks who formally introduced themselves and asked what she would like to be called. Thereafter, for the first six weeks of her admission, she was called Elizabeth, which is her first name, which she has never been called in her life, ever. She s only ever been called by her middle name. But the NHS IT system records your name. All her labels were wrong. In spite of the fact that on a daily basis all of us told the people caring for her that her name is Margaret, and that is what she likes to be called if they want to call her by her first name, all of them called her Elizabeth. And that became very significant when she became confused. Who is in charge? When patients spent many weeks in hospital, they found it difficult to find someone in charge doctor or nurse to talk to about their care. Two daughters described repeated attempts to find a consultant who would answer their questions and give a view on their mothers prospects. They had tried secretaries, asked the ward for an appointment, and even simply turned up on the ward at times they hoped would coincide with ward rounds. When I asked to speak to the doctor in charge they looked at me as if I was completely blown out and said, well you can talk to any of them. I m saying who s the person that has the lead responsibility? and they said they could not say that because it was a different person each day I never got to the bottom of the accountability in the trust. She had a name at the top of the bed but that person did not deliver the care. Another daughter (herself an eminent, retired doctor) tried and failed over eight weeks to find a consultant to talk to about her 90-year-old mother s care. She was told variously that her mother did not belong to this team; the consultant who had admitted her mother was not responsible for patients on this ward; the principal consultant was in a different specialty, and the consultant was on holiday. Finally, when she did manage to track down a consultant who acknowledged responsibility for her mother, it was only to find that the The King s Fund

20 Seeing the person in the patient conversation was restricted to her medical care. The doctor refused to discuss her nursing care, on the grounds that the nurses took offence if the doctor commented on their work and she was not prepared to risk falling out with them. Finding a nurse to talk to about a patient s care can be equally difficult. Whenever I asked that person [the nurse in charge of the shift] they either said they did not know her, did not know she was on the ward, or did not know how she was that day because they were not looking after her. Would I please talk to the nurse in charge of her care! The patient as a parcel The fourth theme in late 2006 was about emergency patients being moved repeatedly from ward to ward after their admission to hospital. Some moves were planned: the patient admitted through the emergency department went first to a medical assessment unit and then on to a ward. But most moves did not seem to the patients to be planned, rather they felt the moves were reactive. They were moved because they had acquired an infection; because they had been put in the wrong place to start with; or because their bed was needed for someone else. One patient talked about feeling like a parcel and a consultant talked of patients as pushed around like a piece of packaging. With every move, patients and relatives worried that the knowledge about them fell away. Arriving in a new environment, with a new group of staff, they would have to begin building relationships again from scratch. One very elderly patient was moved twice in the same night, once at 2am and then again at 5.30am. She was treated like a parcel. The junior doctor on one ward ordered tests but she moved before the results arrived so they were never received. In one of her moves, she was taken by a porter in a wheelchair to the door of one ward. The nurse in charge came to the door and barred the way, telling the porter: You re not bringing her in here. My mother felt anxious she would be lost inside the system. Patients stories have a unique power to engage and move listeners and provide invaluable insights into the relationship between the care process and the patient s world. They provide material from which it is possible to generate hypotheses about relationships between events and causes and are the source par excellence for evidence of the reliability and consistency of standards of service over time and in different settings. What they cannot do is tell us whether a particular patient s or relative s experience is typical. How many others have the same or different experiences? Is the experience part of a trend? For this kind of information hospitals need feedback from larger samples and different kinds of measures. Surveys Surveys of hospital patients began in earnest in the United States 20 years ago with the pioneering work of Gerteis and others (Gerteis et al 1993). Their rigorous approach to developing and testing questions and questionnaires, and selecting sample populations, ensured that the surveys covered topics that patients and relatives felt were important. In the mid-1990s, a team of researchers influenced by the work in the States and working with a member of the original US team, Thomas Delbanco, surveyed patients in 36 English hospitals (Delbanco 1996). This survey was the precursor to what was to become the programme of national patients surveys in England that has been running since These national surveys use postal questionnaires to collect data rather than interviewing 10 The King s Fund 2008